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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To think this therapy program is unfair

125 replies

Happiestyearofmylife · 28/08/2021 19:19

Nhs dbt program they are saying people have to have their camera on to take part. My dd is very self conscious and also has social communication problems. They say it’s because she could have someone else in the room with her but surely you could with the camera on? I understand it for the group bit but it also has a 1-1 bit where only her own problems will be talked about and they still want the camera on Aibu to think people shouldn’t not be allowed therapy over this?

OP posts:
AndyKaufmanIsAlive · 28/08/2021 23:22

@donquixotedelamancha

A lot of people with not a lot of knowledge chucking their well intentioned, but misguided opinions in here.

Indeed. The idea that therapists don't understand what ASD is, or how the EA2010 applies is laughable- as is the idea that f2f appointments will be provided instead because they 'have to'.

I don’t get why in one to one they need to push it

You've had quite a few people explain: because this type of therapy doesn't work over the phone.

Unfortunately there are many, many people working in mental health care who know very little about ASD and how best to accommodate and support autistic people. This is in my experience supporting my DD, and speaking to many other parents with autistic children and autistic adults who have experience of MH care. Also by the fact this very thread exists, where an autistic adult is struggling access support because their social communication needs have not being taken into account.
AndyKaufmanIsAlive · 28/08/2021 23:27

@donquixotedelamancha

that''s a daft thing to say because there are different disabilities that need different adjustments. DBT is not a treatment for ASD AFAIK so you can''t assume everyone there will also have ASD

I don't think it's a daft comparison. The ASD will be a component of the difficulties addressed in the DBT, particularly the communication element. In that respect the other patients will have similar challenges (if for different reasons).

If DD is not at a point where she is able to have her camera on I can't see how she would be able to benefit from the other elements of DBT. The fact that the treatment may not be appropriate is not discrimination.

Of course it's a daft comparison. You can't say neurotypical people have the same difficulties as autistic people, just because they have mental health difficulties in common Hmm You are showing a complete lack of understanding of what autism is there.
Original poster
Happiestyearofmylife · 28/08/2021 23:29

The thing is they have made it clear she won’t get any other therapy if she doesn’t do this.

OP posts:
Theoldprospector · 28/08/2021 23:33

‘Theoldprospector that''s a daft thing to say because there are different disabilities that need different adjustments. DBT is not a treatment for ASD AFAIK so you can''t assume everyone there will also have ASD.’

I am not assuming everyone there will have ASD. I am saying that everyone there will have some kind of issue that would constitute a disability under the equality act.

A therapy that is suitable for one group of people might not be suitable for another. Your need doesn’t outweigh the needs of the rest of the group.

Voice0fReason · 28/08/2021 23:39

Some people have this perception of the Equality Act that it makes service providers do whatever you want if you are disabled and ask for it. That's not what the act requires.

They have to make reasonable adjustments to accommodate the needs of disabled people. If the ground rules they have for running groups are that everyone has their cameras on, is in a room on their own and is able to participate in a group then they don't have to change those rules because someone can't cope with them. What might be reasonable is that a different service is offered, maybe on a 1-1 basis.

Groups only work when there is group participation. Places are limited and are wasted on people who can't participate in them. A different service would be more appropriate for them.

AndyKaufmanIsAlive · 28/08/2021 23:44

Yes but it seems the OPs daughter is not being offered an alternative service 🙄

AndyKaufmanIsAlive · 28/08/2021 23:46

No one is suggesting that disabled people can ask for anything Hmm Just the basics would probably be the start for OPs DD. So that would be mental health care she can access, however that looks!

XenoBitch · 28/08/2021 23:47

@AndyKaufmanIsAlive

Yes but it seems the OPs daughter is not being offered an alternative service 🙄
Sometimes there is not one. I could not have reasonable adjustments for my disability in my last job.. so I ended up leaving.
AndyKaufmanIsAlive · 28/08/2021 23:52

What's wrong with face to face? For the one to one sessions? I mean if it was possible pre covid, then it should be possible 18 months later?

donquixotedelamancha · 28/08/2021 23:53

You are showing a complete lack of understanding of what autism is there.

It's a little childish to say someone doesn't understand a subject just because they don't agree with you.

In my two decades of experience ASD can provide very different challenges to different people and can sometimes present (on the outside) similar difficulties to other communication issues (so much so that language processing issues can be misdiagnosed as ASD). I don't personally think there is a bright line between neurotypical and 'other' and I doubt many people needing DBT feel neurotypical- however none of that was my point:

I meant that this treatment is aimed at getting specific outcomes for DD by getting her to do specific things. Other patients will find that very hard too- that is part of the treatment. The fact that some of the reasons DD will find it hard are related to ASD do not mean it's discrimination to offer the same treatment.

The reasonable adjustment for anyone who can't face therapy via video is that they don't have this treatment.

AndyKaufmanIsAlive · 28/08/2021 23:55

The reasonable adjustment for anyone who can't face therapy via video is that they don't havethistreatment.

I agree, but there should be an alternative offered.

Punxsutawney · 28/08/2021 23:57

My autistic Ds has been on the Camhs caseload for a year and is unable to access any online therapy, due to anxiety and communication difficulties. Unfortunately he's ended up with no therapy at all. We have been told that he may be starting some face to face in a few weeks....I'm not optimistic.

Theoldprospector · 28/08/2021 23:59

Waiting lists are really long for therapy though.

I waited a year for bog standard online counselling.

Mental health services are broken.

SausageRollFan · 29/08/2021 00:02

@AndyKaufmanIsAlive

My DD has social communication problems (as part of ASD) and also won't engage with therapy virtually. Her team made reasonable adjustments for her, and she was allowed face to face therapy, even during the lockdown earlier this year. If your DD has a disability (not sure what her dificulties are?) and can't access the therapy in the usual format, then they are obliged to make reasonable adjustments and provide something accessible.
This! Write to them suggesting reasonable adjustments and mention the equality act. Sorted our nhs right out when they refused cbt because child couldn't speak.
SausageRollFan · 29/08/2021 00:04

@Voice0fReason

Some people have this perception of the Equality Act that it makes service providers do whatever you want if you are disabled and ask for it. That's not what the act requires.

They have to make reasonable adjustments to accommodate the needs of disabled people. If the ground rules they have for running groups are that everyone has their cameras on, is in a room on their own and is able to participate in a group then they don't have to change those rules because someone can't cope with them. What might be reasonable is that a different service is offered, maybe on a 1-1 basis.

Groups only work when there is group participation. Places are limited and are wasted on people who can't participate in them. A different service would be more appropriate for them.

Or they could do it 1-1 or face to face. Wild thought I know.
AndyKaufmanIsAlive · 29/08/2021 00:05

@Punxsutawney

My autistic Ds has been on the Camhs caseload for a year and is unable to access any online therapy, due to anxiety and communication difficulties. Unfortunately he's ended up with no therapy at all. We have been told that he may be starting some face to face in a few weeks....I'm not optimistic.
That's awful Sad

When lockdown happened at the beginning of the year and most therapy went online, my DD was offered face to face because she can't access online due to her ASD. They had difficulty finding clinic space to see her, so they were going to see her I school, but then school stopped all visitors. So her CAMHS therapist came to our home to see her each week. They were brilliant and it meant she could continue her therapy (which she'd wished 18 months for). But that therapist was part of the learning disabilities team, they were brilliant and more than happy to put in accommodations for their young people, I guess because they're used to it.

Original poster
Happiestyearofmylife · 29/08/2021 00:05

They won’t offer 1-1 as they say she has eupd.

OP posts:
Oscailandoras · 29/08/2021 00:13

Are posters not jumping the gun here? The OP has not said anywhere that her dd has asd or in fact any diagnosed disability? She said My dd is very self conscious and also has social communication problems.

Do you not need to have a diagnosed disability for a lot of the advise here? Without the op clarifying that I'm not sure a lot of the advice here is actually useful?

Punxsutawney · 29/08/2021 00:17

Andy it sounds like good reasonably adjustments were made for your Dd. Ds has been seriously let down by the NHS, the education system and our LA. And most recently by social care after he was referred to them, they closed his case, having never even met him

It is shocking, the way we treat some of the most vulnerable in society.

esloquehay · 29/08/2021 00:18

If the treatment of the clinical pathway that your DD is on is DBT and is what is recommended then, no, they won't be able to offer just one to one for your daughter.
I'm in a similar-ish position that I chose to discontinue an online DBT based group, as it wasn't at all efficacious. Due to finite resources, this service cannot offer me an alternative and I have been given a therapeutic discharge.
Your daughter either accepts the terms of this group, or gets no help. That's the shitty reality of MH provision in this country.

SausageRollFan · 29/08/2021 00:19

@Oscailandoras

Are posters not jumping the gun here? The OP has not said anywhere that her dd has asd or in fact any diagnosed disability? She said My dd is very self conscious and also has social communication problems.

Do you not need to have a diagnosed disability for a lot of the advise here? Without the op clarifying that I'm not sure a lot of the advice here is actually useful?

No, you don't have to have a diagnosed disability
esloquehay · 29/08/2021 00:20

@Oscailandoras, OP confirmed that her daughter has ASD...🙄

AndyKaufmanIsAlive · 29/08/2021 00:21

OP said her DD has ASD.

SometimesRavenSometimesParrot · 29/08/2021 00:36

@Happiestyearofmylife

They won’t offer 1-1 as they say she has eupd.
OP in this message you say she can’t have 1-2-1 but in a previous message you say you don’t know why they need to push for camera on in 1-2-1? If she’s not getting that support why does it matter what the rules are?

For what it’s worth, I do 1-2-1 support for students from disadvantaged backgrounds moving onto uni. I’m not allowed to do face to face, can’t do it by phone because I often need to show things like how to use UCAS for instance and it is RUBBISH trying to do it with their camera off. I’ve got no idea if they’re listening or they’ve understood and quite often in the last year they’ve followed up with lots of emails covering the same topic, so I’d guess it’s not as effective either.

And thats just a guidance session, not therapy which is much more involved!